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  • Nebido?

    Hi all, I'm after a bit of advice/guidance. I've been a long time visitor, just not much of a poster so hopefully this will tell you that i'm kinda feeling desperate. I'm almost 5 years clear from TC, 5 years this month actually, I had to go onto Testosterone replacement a few months after my orchidectomy. I went on the gels for a while and then switched to Nebido injections every 12 weeks, this was then reduced to 10 weeks as my levels were still struggling. I felt fine for a long time, but for the last year I've really been struggling, it started as not being able to sleep but has now moved onto what feels like anxiety attacks and almost depression. It was mainly during the end/start of my 10 week cycle but now its grown to be almost constant. I've ignored it and put it down to not having a good injection but i really think its more than this, I've broken down crying just writing this its gotten that bad. Has anyone else had issues with Nebido? what alternatives are there in the UK that i can maybe ask about? I'm seeing my oncologist on the 10th of January and I just cant carry on like this I'm a mess. Any advice would be really welcome, I don't want to sound needy but I don't have anywhere else to turn.
    15/11/12: Lump found on right testicle.
    16/11/12: Visit to GP, referred to urologist.
    23/11/12: Consultation with urologist, blood taken markers normal apart from mildly raised LDH of 364.
    24/11/12: Ultrasound confirms solid tumor.
    28/11/12: CT scan of chest, abdomen and pelvis. Scan is clear.
    30/11/12: Right IO, prosthetic testicle inserted.
    17/12/12: pT1, 100% seminoma diagnosed.
    Awaiting carboplatin treatment in Jan.

  • #2
    A typical Oncologist is not going to be an expert on hormone replacement. I would suggest finding a urologist who knows and understands testosterone treatment well, or ask for a referral from your general doc. I'm sure a doctor with some expertise in this relatively unknown area can help improve your situation. There are other gels, shorter term shots, pellets, and maybe even other T options.
    6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
    6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
    7/7/15: bHCG 56, AFP 42, LDH 322
    7/13/15 - 9/18/15: 4xEP
    10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
    10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
    4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
    4/20/16: RPLND @ IU - teratoma only!
    9/27/2018 all clears up to this date!

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    • #3
      Thanks for your reply, do you know of any specific products i can mention that are available for me in the UK? My GP wasn't keen on doing anything without the oncologists advice. should i try and get refereed to an endocrinologist and bypass this 3 way argument i always go through? Thank you for for taking the time to reply, you honestly don't know how what it means
      15/11/12: Lump found on right testicle.
      16/11/12: Visit to GP, referred to urologist.
      23/11/12: Consultation with urologist, blood taken markers normal apart from mildly raised LDH of 364.
      24/11/12: Ultrasound confirms solid tumor.
      28/11/12: CT scan of chest, abdomen and pelvis. Scan is clear.
      30/11/12: Right IO, prosthetic testicle inserted.
      17/12/12: pT1, 100% seminoma diagnosed.
      Awaiting carboplatin treatment in Jan.

      Comment


      • #4
        No problem, yes, going specifically to an endocrinologist would be the preferred way!
        6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
        6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
        7/7/15: bHCG 56, AFP 42, LDH 322
        7/13/15 - 9/18/15: 4xEP
        10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
        10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
        4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
        4/20/16: RPLND @ IU - teratoma only!
        9/27/2018 all clears up to this date!

        Comment


        • #5
          Have they been checking your hormone levels regularly? If so, has there been any changes?

          Dave
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

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